I think the thing is, and it can be hard.... to find the positives and focus on those. It can be hard, especially at a pivotal time such as your teen years... late teens in particular when life begins to change. I am by no means downplaying the severity of this disease. It is and can be debilitating, disabling. It can make making clothing a near impossibility due to pain, if nothing else such as the issue with bleeding through clothes etc.

I feel your pain, it is one that I know. I had this disease for many years before it was diagnosed appropriately. For years it was just bacterial infections until I finally was able to see a specialist and confirmed what I already knew - it wasn't just bacterial infections, there was something else going on that made bacterial infections possible... and more likely - HS.

It can be tough, I've certainly had my times when I thought that I'd rather die than not deal with the pain any longer. There are some things that work for some people with changing lifestyle. For some it is weight loss - though this disease is not a byproduct of weight by any means, some see remarkable results in terms of severity dropping from essentially having less tissue for these lesions and sinus tracts to bear down on and grow. Some have luck with moving to a gluten free diet, a low carb diet, vegetarian diets etc. I think the trick is to try things and see if something works for you.

For me, I keep myself grounded because I know there are worse things that could be. For example, I have a friend who has, and has known since high school that he is terminally ill. He has a disease that puts him in the hospital for weeks at a time on heavy doses of pain cocktails, fentanyl, morphine, oxycodone etc. If he sees 40, he'll be lucky and as much as HS can be a hindrance - I've lost jobs because of flare ups, I've had school interrupted.... He quite literally cannot do anything or make plans for much of anything. We have it bad, we sure do... but while things could be better, they can always be worse.

The physical pain, and it can and is severe - I've yet to find any method of making that better. The psychological pain, and that may even be worse than the physical pain - I just try to remind myself that I'm a decent dude. Or try to be. I've lost friends, I've closed myself off from the possibility of relationships for lack of wanting to reveal my scars and open lesions and questions about an std for where some of my problem areas are. I'm very sociable, but I've missed out on a lot of things and had friends think I was a reclusive antisocial type avoiding them or a hypochondriac making up some story about recurring infections.

It's not the easiest "cross" to bear.... but the key I think is hopefully talking to people who share the same affliction here.. I say hopefully because I'm very new here and very new to knowing what I have! Remaining focused on the positives of who I am as a person and knowing that it is the "content of my character" if I may paraphrase and borrow from Dr. King that makes me who I am, not a physical ailment no matter how difficult it may be to deal with.

I know I couldn't provide any real solid insights to help, but if you should ever need someone to talk with, I'll be your HS buddy for sure ;)

Keep your head up. It's tough, but maybe someday we'll be part of a test group for a new medication or procedure that leads to a cure or at least a way to control this dreadful disease.

PS I second your sentiment... eff HS! haha :p

Thank you so much! That helped a lot! You said a lot of true things, and it something we just have to accept although it sucks. Thanks for being there! I'm just looking forward to talking to people who have it too, because they understand what I'm going through. Pity-party is not the way to handle things. I'll definitely take you up on that offer to be HS buddies! lol

you're very welcome.... anytime :) .... and hey, don't completely discount the pity parties. we all have hard days and moments of weakness and vulnerability in life... sometimes they help, just find an HS buddy and pity party like rock stars together? and then walk away from the party supporting and helping each other.

I figure as much as HS can suck and gets in the way of a lot of things in life, it can't change the who I am from a mental, emotional, spirit level - I might look defective on the outside, but it would be worse if I was a mean, spiteful, hate filled person. It's sort of like going on a date with someone you've got the hots for and then you realize that they're horrific on the inside and it made that pretty exterior suddenly unattractive. So we've got things going on externally that are brutal, big whoop! haha . Now, when I have a failed relationship due to HS rearing it's ugly head, remind me of this please? hahaha oh man!

That is all so true! I actually smiled reading that. I'm just having a hard time thinking people will understand when I tell them, because they don't. I didn't talk about it with anyone cause people a judgmental and suck sometimes. But all I have been doing is reading posts and comments, and I feel comfort knowing people understand. The pain sucks and I would never want anyone to have this, but knowing I'm not alone is soo relieving! Plus we can all bitch and moan together when times get rough. lol

At 17 mine was still mild stage one and I had problems emotionally connecting with people because of it. Finally I just accepted it and told my friends and they accepted it. I still have the same friends almost ten years later. Mine isn't as bad as it could be but its gotten worse. I wish it didn't exist it depresses me so bad sometimes! But I just tell myself there is always tomorrow and maybe someday a cure!

I have had HS for 20 years and in the past year finally been correctly diagnoised, and it has not been an easy journey. But remember people are scared of the unknown. HS is not out there in the community eye like Breast Cancer. We have to educate. If someone doesn't except you for you and your HS, then frankly they dont need to be there in. Your parents are more then welcome to read this site and I think they might have a better insight how this really can be a life long process with many a painfull ups and downs. Pitty parties are needed from time to time but then we need to bounce back into life. Dont give up on yourself you are completely worth something good you just need to find it.

i am suffering from HS since 12 yrs now.. but i have got it in control... now the latest thing i ma trying is zinc supplement.. and i am very optimistic about it!!

i am drinking turmeric mixed with milk everyday, i am using head and shoulders shampoo as a body wash to kill the bacteria which is working so good(do some research on head and shoulders) and gluten free diet.. i used to get at least 10-12 cyst a week and now it has reduced to 2... don't give up hope... keep researching.. u should definitely try the zinc supplement it has worked wonders for many HS sufferers ..

I think Steve said it all, but I can add the only part I understand: My husband has HS and while he often finds particular aspects embarrassing and awkward, I care way more about him than a disease/illness! He is beautiful to me and I do what I can to help and sometimes that means I close my eyes so that he doesn't have to have someone see the scars or sores. Don't give up on finding more people who care more about you than an illness. On the outside looking in, some may say it's "gross" or other foolish things, so here's hoping you find relationships that are supportive and encouraging!

Thank you everyone! It helps to read the things you guys have to say.

And I am taking 100mg of zinc everyday for the past seven months. It hasn't done much.

I feel your pain! We do have our good days and weeks. I must say I was enjoying a couple YEARS of a break but now I keep flaring with a vengeance! Twenty two years of this and now I worry about my kids developing it. Recently I was diagnosed with an autoimmune disease called ankylosing spondylitis and I'm worried about my kids with that too. And my rheumatologist keeps telling me to swim to help my joints and I keep reminding him that my HS is flaring like a you know what right now so "no thanks!"

Sorry, a bit of a tangent...As far as the stuff that works....Well, it is different for everyone but I've definately noticed a difference when I take natural supplements to fight inflammation and eat healthier. I have to watch the stress levels because that triggers mother of all flares! Some of what I'm doing to help my other illness is helping to tame the HS. But I hold onto sweet, sweet memories like a great vacation or fun day with the family when my HS wasn't flaring. That gives me drive to go on. And thank goodness for my hubby, he has been fantastic to me these 10 years! He always compliments me and makes me feel so good about myself even after he has had to help me bandage or clean clothes. That's a positive for sure!

I think I made this account just to reply to your post.

I'm 17,too. But i'm letting you know there is hope. I'm a senior now, and I getting ready to go to college. I know exactly how you feel, I've been where you have been. I tried overdosing many times. You CAN GET THROUGH THIS! I promise.

My HS was the absolute worst when I was a freshman, "supposed" to be your best year in high school, mine was NO where near. I was in 3rd stage as soon was my bumps started. I had HUGE wounds under my arms, my breast, my sides, and my groin.( plus it was worst because i was/am obese) I couldn't lift my arms at all, i walked at like 1/16 miles per hour, my wounds gave off the nastiest smell, it was sickening.

But you have to tell your family, they should be your biggest support system. Your closest friends also, they might we like 'what is that" but if they are your REAL friends they will be right by your side every step of the way.

The MOSt important thing is you need to find a doctor that specializes in HS disease to help you, my doctor is an hour away from me, but it was worth every trip, every dollar i paid to the hospital, and every ounce of gas brought. I have a quality of life now, even thou I did spend around a months time in the hospital .

You are gonna make it. Some day are gonna feel bad some better and some great. But choose something in your future to drive you. Like something that drives me is one day working at the hospital that helped me soo much, Vanderbilt Medical Hospital.

Thank you so much. I think we relate the most because of our age and experiences. But I'm proud of you for staying strong! Everyone is so encouraging to just go on. And I am. I am changing life for the better. The things you said are al so true and relatable. I'm glad you have found helpful doctors and things for HS. Thanks for your response!

Oh my God I totally relate to your feelings of darkness. As if the physical pain isn't bad enough my mind used to be in a dark psychological hell as well. You just reminded me of how shitty it used to be. I will say it does get better....once you choose to LIVE no matter what. I had chronic depression issues. Honestly I cannot function without antidepressants. I would just lay around feeling so sad and sorry for myself and could not bring myself to do anything but get fucked up on alcohol or drugs.

It takes a while, but finding a good therapist to open up to helped me. It took some trial and error with different antidepressants but now I'm balanced out. I also have to attend AA and NA meetings for my addiction issues.

Thats not even to the physical issue of the HS yet. Eventually my derm just got me on some long term antibiotics and pain medicine. Its how I live my life now. I really can't function too well without my pain medicine.....it sounds like you need to get a referral to pain management and get on some antidepressants like I had too. Your attitude and quality of life will greatly increase when your physical pain is diminished and the depression eases up a bit as well.

Its hard but I've had to learn to love and accept myself WITH HS. I cannot compare myself to 'normal' people. AKA my friends, classmates, ect;. I cannot keep up with normal people and in a way It makes me seem older and wiser I guess. But it is what it is. I spent many years during my early twenties trying to live up to everyone elses expectations of me. But ultimately I came to the place where I had to learn to just accept and be happy with who I am and what I can do. It was so tough. I'm 28 now and each day has new challenges as well as joys.


Normal people don't understand. Fuck em though.....you are who you are and that's just how it is.

It does get better once you make the decision to live no matter what. It will take time to get to the doctors and get the therapies you need. It takes time to get your meds in balance too. It will not happen over night so don't expect it to.

There's nothing wrong with having to get help.

Today I just accept who I am. I take it easy and don't struggle against life. I have a conception of God that I can do business with. I focus a little more on spirituality than I used to and it gets me by. But I'm not a bible thumper or anything. Also helping others is a great way to forget about your own problems. Remember there is always someone who has it worse. Giving people advice on this forum is therapeutic for me too. Cause I've been through what you're going through and I can offer advice so it gives me a sense of purpose you know?

You will figure it out with time.

My ass hurts and leaks still. I still deal with pain and the odors and everything else that comes along with HS. But over the years I've developed a system that works for me. I take about two showers a day and wear 3 pairs of underwear under a pair of basketball shorts under my pants. I used gold bond or off brand medicated body powder right when i get out of the shower to kill the smell. When I go to class I take a can of AXE body spray in my bad and have to go to the bathroom to clean up after each class but I've learned to do what i GOT TO DO. That sort of stuff used to fuck with my head but I'm still function and contributing to society.


Now I'm buying wholesale stuff in bulk and selling it on ebay instead of working. That way I don't have to really be out in public much and I set my own hours.


I'm telling you, if you keep trying you will find a way and life that works for you though its tough at times.

Hang in there

Love you,

Dus